Most of us would like to somehow have a choice in how we “go,” and it’s our own personal belief as to where exactly we may be “going.” Sadly, more often than not, the choice is not ours to make. It’s all well and good to map it out for yourself (or a loved one) but it is so much different when the time is upon you.
I said good-bye to my mom two days ago—good-bye for what I think may be the last time in person. Visiting for her 91st birthday in Normal, Illinois, I found she’d been admitted to the hospital after a stroke. Her left arm was completely paralyzed and, unable to swallow, she had been put on a feeding tube. Her body had failed her, though her mind was mostly intact. Her eyes lit up when she saw me; she was able to write notes. She laughed at some of my stories about the kids and would give us the “OK” sign with thumb and index finger. She seemed to come and go, with moments of clarity and lots of sleep. I brought her a palm from Palm Sunday Mass and her rosary and she listened to mass on my Kindle.
The plan was for her to go to a skilled nursing center for rehab because doctors thought she might get some use of her arm. We all knew that she would not return to the family home that she had lived in until now with my oldest brother. She really wanted to stay in that house until she died. My dad had passed in that house and she was determined to do the same or “come damn close.”
As I was leaving to come home to California, I kissed her good-bye and told her to hang in there, and then almost as an afterthought, said, “Or do you want to mom? Do you want to do this anymore?” She shook her head, motioned for the clipboard and wrote “I’m done. I want to see Marion and Marilyn.” Marion was my dad, who passed eight years ago after 60 years of marriage. Marilyn was her best friend and mall walking buddy who had just died suddenly. Losing her last remaining friend was a hard blow for mom.
After reading what mom had written, I left the room and told my brother what happened. Over the course of the next hour or so she wrote down: “I’m done, I want to go, I’m ready for the Lord to take me, NO casket. I sure had fun with you kids.” She wrote “I want a mass,” which made me laugh. I looked at her (she being more Catholic than the Pope) and said “Mom, do you think we’d forget to give you a mass?” She laughed. I asked her if she wanted to finally find out if all those Sundays at mass were going to pay off. She smiled and gave me a nod and thumbs up. I also asked if in her obituary I could say that I was her favorite. Another laugh.
My mom had a Health Care Directive stating she wanted no extraordinary means of being kept alive. We met with the palliative care rep from the hospital. She talked to mom and explained the options: Go to nursing home/rehab and try to get better which would mean a stomach feeding tube or no feeding tube which would lead to her end of life. Mom took the clipboard and wrote, “I’m done”. The staff person looked at mom and said, “I know this is hard but it’s wonderful that you can make this decision. You are taking a great burden off of your children because you are able to say what you want.”
I’m not sure if that was for mom’s benefit or ours—it didn’t feel like a burden lifted. I know that some of the doctors and nursing staff questioned the decision. The neurologist was recommending rehab. Should we encourage her to put in the stomach feeding tube and go for rehab? Should we give it a shot and see what happened? Did she really understand? It all seemed too fast, too soon.
We needed to let mom have some say in this last decision. While she had some level of control, we needed to let her dictate how this would play out.
As I sat with mom and watched her with a nutrition tube through her nose, unable to even drink liquids of any kind, struggling to move, I thought of the adventurous soul that was inside the frail, bruised shell in that bed. The girl, who at 18 took the train out of a small Missouri town to Washington, DC, went to work in the secretary pool at the Pentagon in the midst of WWII, moved to New York and had adventures upon adventures before meeting dad and settling down in the Midwest to raise a family. The woman who took up bicycling at age 50 and then went on to bike throughout the United States and Nova Scotia. The mom who showed up at my friends college costume party wearing a halter top, smoking a cigarette in an ivory cigarette holder and wearing a lampshade hat on her head. She was someone who loved an adventure and was always game for the next one.
My brother put it best: “Well, mom always had to have the wind in her face, and if she can’t be in her kitchen whipping up a chocolate cake then she’s not going to be happy.”
The problem with making a choice to go when you have your wits is that you have your wits. The fact that mom could laugh and smile and communicate made it harder to allow her to stop trying. But then the problem is when you don’t have your wits you can’t say what you want and the decision falls to someone else.
In the end, the siblings (there are five of us) decided that we needed to let mom have some say in this last decision. While she had some level of control, we needed to let her dictate how this would play out. So I said good-bye, three different times before I could finally leave. The feeding tube is gone and she is now in hospice to be made as comfortable as possible while she rides out the time she has left. She is certain that Marion and Marilyn wait on the other side and I have to let her go find out.